Sometimes it is meningitis

Three and a half months ago my son, Nisien, was dragged into the world through the sunroof by several pairs of hands after getting stuck halfway down the trapdoor. It was a pretty traumatic birth with so many complications before and after – but it pales into comparison with last weekend’s events.

Nisien hadn’t been himself all week. A pretty contented baby, generally, he’d been quite tetchy and difficult to settle, but I wouldn’t have described him as ill.

On Friday night my husband, Derick, and I took Nisien and his big sister, Tegai, to the local school fair. He had a bit of a temperature – nothing significant – and I noticed his hands and feet felt a bit cold.

By Saturday, Nisien definitely seemed a bit unwell, but his temperature was only in the mid 37s and peaked at 38 – again, not significant. So we carried on and went out for the day. Nisien was quite tearful, but he’d cried for 5 hours straight the previous Saturday, and I’d taken him to Out of Hours at Ysbyty Gwynedd, only for him to be absolutely fine when we arrived (making me feel like an over anxious mum).

By 6pm we were a bit worried. The crying had turned to moaning, he hadn’t fed much during the day, his breathing sounded a little fast and he still had a slight temperature. I thought he must have a pain somewhere so I called the out of hours service again. I was advised to take him to the hospital for a check up, but there wasn’t an appointment available until 9.15pm.

Nisien was seen at 9.30pm. The doc took his temperature, saw a rash on his legs and said we had to go to the children’s ward immediately. It was pretty obvious what she was concerned about, and I felt utterly stupid. My cousin’s daughter almost died and lost her hearing to meningitis, we were supposed to be so wise to it. I’d noticed the rash but was sure it was blanching and just thought it was a heat rash.

After arriving on the ward, Nisien was seen by 2 paediatricians and a nurse. He was fretful, had a temperature, a full fontanelle and a rash on his legs. I was told these all hinted at meningitis. They took blood samples and immediately started a course of IV antibiotics. The doctors were extremely worried about him.

Initial blood results were in our favour – CRP levels (usually elevated in meningitis cases) were low. We felt positive. By this point Nisien was clearly very unwell and fighting something, but at least it wasn’t meningitis.

He was closely monitored all night and a doctor came round on Sunday morning and asked us to catch an urine sample to rule out an urine infection before moving on to a lumbar puncture, so we sat for a couple of hours with a funnel and a test post under his tackle, literally trying to catch some pee.

Urine was clear – time to move on to the dreaded lumbar puncture. The nurse told me parents don’t usually accompany their children for this procedure as it’s quite distressing to watch, but I couldn’t bear to think of him alone in a room full of strangers having a horrible procedure so I went with him. And it was pretty awful.

Nisien seemed better by Sunday afternoon, so I was quite confident that the results of the lumbar puncture would be clear. Then came the bombshell – results showed an increased white blood cell count indicating meningitis and there was a risk his hearing would be affected. Derick was at home with Tegai, so I was alone and devastated – our lovely little boy. I held him and cried all night. I felt so bad for not taking him in sooner and taking him out and about when he was so unwell.

On Monday afternoon, Nisien really turned a corner and was more like his normal happy self again. He even smiled. He was doing so well. One of the paediatricians came to see him and told us they were very optimistic about his future and suggested being able to go home on Tuesday on home leave and return to the hospital daily to finish the 10 day antibiotic course if he continued to improve. And home we went.

He’s recovered fantastically, and it’s lovely being home again. I hadn’t seen my daughter, Tegai, since Saturday, and Nisien didn’t stop smiling when he saw his big sister.

We won’t know for a few months whether his hearing has been affected but Nisien’s happy and healthy, and we’re so grateful for Ysbyty Gwynedd’s quick diagnosis and treatment.

I’ll never worry about looking like an over anxious mum again, it’s not worth the risk.

By Anest Gwyn.

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